MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/22/2016 - 10:13am
Replies by: Anonymous, debwray

Had surgery in July now and biopsy was good. Now I've developed fluid around my lung my leg continues to swell. I'm not sure if this is related to melanoma but X-ray showed normal heart and lungs. No lung disorders. Waiting on results of CT Scan just wondering if anyone else had a similar experience. 

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JoshF's picture
Replies 19
Last reply 9/21/2016 - 9:57pm

At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news...thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months...nothing has stopped this dreaded crap and therefore nothing got done.

So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.

Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff...symptoms to look for etc...Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!

Be well!!

Josh

Let's work for better treatments....for a cure!!!!

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snow white's picture
Replies 3
Last reply 9/21/2016 - 7:14pm
Replies by: snow white, Polymath, MoiraM

Hello there,

I am new to this forum.  I myself am a Uterine cancer survivor, but I am not here to talk about myself.  My Dad is 72 years old (very healthy overall)  and was diagnosed with colon cancer last year, he had it removed and no more treatment was necessary.  In June 2016 he went in for follow up and they did a CT scan, the colon was fine but they found something on his Lung and possibly his spleen.  He had surgery to remove the spot on his lung last month and the pathology came back that it was Melanoma.  We were shocked.  Now after alot of tests etc.  we just found out that he now has metastis in his brain (12 spots) small intestine (1) spleen (more than 12) upper right thigh.  WHAT?????? SHOCK!!

So far from what I know (this only happened 2 days ago), he will be doing radiation on his brain  (the whole brain) at Hoag in Newport Beach, ca.  He is also going to be starting a trial at USC (don't know the name).  He is waiting for his BRAF? test to come back.

My Dad has NO symptoms what so ever.  I am so scared, this is all so confusing. They said if he didn't do any treatment that he would be dead in 4-6 months!!!!   Any and all input would be greatly appreciated.

 

Thank you!!!!!!

Jennifer

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/21/2016 - 4:10pm
Replies by: Mawmaw2017, jennunicorn, Anonymous, Ed Williams

I went in this past week because I had a mole that was bothering me. It has been itching for the past 2-3 months. At first just intermittently and then constantly. I had my husband look at it because I told him it felt larger. I can't see it as it is on the back of my neck. He said it looked inflamed around the base of the mole and looked like it was growing a blister on top but didn't look like it was filled with fluid. I went to my doctor and he told me I needed to see the dermatologist. The first available was a month and a half wait. The itching got to be really bad so I called and asked to be seen sooner. I went in on Wednesday last week. The dermatologist said the mole needed removed because it did not look right and that it did look like a blister on top but that it was firm. She used a punch to remove it and now I have 3 stitched where the mole used to be. They took pictures and measured it but didn't say anything to me other than to come get the stitches out in two weeks. How long does it take to get a biopsy back?  Is there anything other than melanoma that can cause itching in an existing mole. I am very nervous. If it is melanoma is itching considered an initial or later symptom ? Thanks in advance.

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stotes's picture
Replies 4
Last reply 9/21/2016 - 3:34pm

I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle.  Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)?  Or should I just start Opdivo alone?  I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system.  The trial is not randomized so I know that I will get the drugs.  I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it.  I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices.....  Christal 

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laulamb's picture
Replies 3
Last reply 9/21/2016 - 2:42pm
Replies by: laulamb, Gene_S, sleepyt23

Hello,  I had my 3rd infusion of ipi 3mg on 9/13.  I was looking at my bloodwork over the weekend and I noticed my LDH (Lactate Dehydrogenase) levels: 

8/2 = 163, 8/23 = 156 and 9/13 = 195

(range should be 92-192 U/L)

Is there concern for my LDH to rise to 195 before my 3rd infusion?  

Thanks in advance!!   

Laura

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LEEPOINTON's picture
Replies 3
Last reply 9/21/2016 - 11:46am
Replies by: ian0502, SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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I know we all insist that your oncologist matters...and it does!!! A specialist in Melanoma stays up-to-date on all the newest information and medications, giving you a greater chance of good outcomes.

But do we focus as much on our surgeons?? All surgeons are NOT created equal. Here's a new study out thats a good guide on what you should look for and what you should ask before surgery to get a better outcome.

http://www.wsj.com/articles/a-new-factor-when-choosing-a-surgeon-1474301023

Always do your homework and keep fighting!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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Check this out:  www.shadeitgreen.org

 

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ronald duclos's picture
Replies 34
Last reply 9/20/2016 - 5:52pm

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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Beth606's picture
Replies 10
Last reply 9/20/2016 - 12:19pm

I'm looking for some reassurance or information. I had a thin melanoma removed from my left calf in March of this year. Stage 1a, 0.40, mitotic >1...all the things you want it to be other than Stage 0. Fast forward to the past month. I have had typical drainage from mild seasonal allergies, my ears have a lot of pressure, but then last week I noticed my lymph nodes under my chin are enlarged. i went to my GP who gave me an antibiotic in case it is a bacterial infection. I started the antibiotic on Friday, nodes still swollen. They are soft and movable.

It just so happens my regular 3 month follow up is in a few days, so hopefully I will get more info then. I'm just

I don't know if I'm totally overreacting? At my staging should I logically assume this is a viral or bacterial infection? I hope I'm just concerned for no reason.

 

    

Beth Johnson 

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Amanda's picture
Replies 3
Last reply 9/20/2016 - 5:20am
Replies by: Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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Travis G.'s picture
Replies 5
Last reply 9/20/2016 - 12:19am
Replies by: Anonymous, Aida Ballesteros, debwray, youngann, Gene_S

How can they tell you what Stage you are without the pet/ct scan results? I'm told I'm stage 3 after the SNB. Just wondering. Thanks.

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stevecathy's picture
Replies 6
Last reply 9/19/2016 - 5:42pm

Thinking of a second opinion. My husband is currently seen at ctca in zion. He has been on mek/taf combo for about 8 months . We have had ups and downs with side effects. Now he is having double vision. He has had 4 infusions of yerovoy, but then had Mets in transit so they immediately started combo. Just looking for possible 2nd opinion. We are in central Illinois so st. Louis or Chicago??? Any thoughts would be appreciated. Thank you

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/19/2016 - 3:42pm
Replies by: sleepyt23, Anonymous, jamieth29, Ed Williams

I had a slnb then a clnd in nov 2015. I got really sick recently with a bad cold. Sore throat slight fever but now all i have is the congestion with a cough. Wed i noticed a red slightly raised bump 3mm red in color.(painless) What do intransit melanoma looks like. All the melanoma intransit pics look nothing like this tiny red bump. All look black and scattered.Can anyone tell me what intransits look like. Im just praying its a pimple or boil from the bad cold i had. God bless all of you brave people fighting the fight everyday. Anon
btw the mark is above the skin by my clnd

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